Merry Christmas Eve!
Praying for a special blessing on you and your loved ones as you gather this weekend. May you savor the joy of being together.
Just a couple of updates from my last post. We were able to schedule an exam with the opthalmology department for the middle of March. We were also able to (after 5 phone calls, geeze people) get an appointment for a wheelchair consultation. Unfortunately, that is also for March, which means about 6 more months until we get a chair. Boo.
On an encouraging note, Aimee is talking more and more every day. It is WONDERFUL! We love hearing her voice her opinions, tell tales and imitate noises. It is finally starting to feel like we can connect with her. I want SO much more, but am definitely excited for the improvement.
12.16.10
-Victory Family Christmas Photo-Another disappointment this week. We found out we will not being getting a wheelchair ordered by the end of this year. After a frustrating set of delays with the home care company, we have decided to begin the process over again with Children's. Given their volume of clients, we are hoping that they will be better prepared to guide us through this order and through the insurance company requirements. I am really hoping that they will allow us to order the chair we had already picked out. After searching through catalogs and online retailers, it seems to be the best fit for us (plus, it is the coolest).
Tuesday, Aimee and I met with the Neurodevelopmental Clinic. Nothing new or exciting here. They still don't have any major revelations for us. He is going to allow us to have Aimee's eyes retested finally! It may not make any difference, but the hearing aids helped so much that I want to be sure there is nothing they can do. It has also been a year since we were last there.
He is also recommending that we start taking Aimee to the dentist, since she will soon be 2 years old (yikes!). I am hoping that our regular dentist will feel comfortable treating her.
We had her head measured again while we were there and it looks like she has dropped the slightest amount on the percentile chart (from .29% to .26%). When you are barely on the chart though, those little numbers make a difference. The growth curve is flattening out for her, as it does normally at this age. Too bad, I was hoping for a bit of catch up.
Next week Aimee will be having another Chiropractic exam. Maybe we will be able to switch from two adjustments to one a week. Maybe. We are also hoping to go in very soon and meet with the Physical Therapist down at Children's to get this chair order rolling.
These next few weeks should be nice and quiet on our front. Occupational therapy is on break as of the end of this week, as well as, the school district.
12.9.10
-Daddy and Aimee before bed time-We received several test results back this week-all normal. First of all, the CMV test that we had authorized 3 months ago, which we were pretty excited about, came back negative. Almost all of the symptoms for this disorder matched Aimee's situation...but here we are. Also, the hormone tests and bone age tests that we had taken 2 weeks ago came back normal.
While it is nice to rule out possibilities, we seem to have ruled out all of them now. Tuesday Aimee and I will meet with the Neurodevelopmental clinic again. I am not really expecting anything extraordinary from this however. There doesn't seem to be any stones left to turn over. It is very disappointing and discouraging.
In other news, we would like to teach Aimee that she has the ability to make choices (i.e. does she want to read a book or play in her activity room). In order to get to that place, we are attempting to teach her an association between an activity and an object. For example, last night before we gave her a bath, I brought her a wash cloth. I rubbed it between her fingers and gave her a chance to smell it. Before we give her a taste of food, we will give her a syringe to feel. Eventually, we will also have objects for her to associate with places we are going to go or people who are coming to visit. The hope with this would be she will understand what is going to happen next. Eventually, we would present her with 2 different objects and watch for her sign that she chooses one.
We decided to go with a blue wheelchair. Out of the 3 options, it seems to go best with Aimee. We are still pushing to get it processed and ordered this year. Please pray that this order would go through the insurance company smoothly.
11.24.10
-Aimee and her new bath chair-
Aimee and I braved the weather this week to travel to Children's on Monday and Wednesday this week. Always fun to add a bit more to that adventure!
We met with Orthopedics and Orthotics first. Her feet are doing exceptionally well. The doctor said if it wasn't for her heel scars, he wouldn't be able to tell she ever had clubbed feet. He is always very proud of his work. Aimee was also measured for a new pair of shoes and a new bar.
We then had our anticipated visit with the GI Nutritionist. She had performed her analysis of the blended recipes for Aimee's diet and...I passed! Yippee! She was so impressed that she treated me the complete opposite of last time. She said I could make substitutions and just make sure that Aimee was getting the average amounts of each category over a weeks time. I'm not sure what happened or if it was actually her malicious twin that I met with last time, but HOORAY!
Wednesday we went back down to see the Adolescent Medicine doctor. Mixed results from this appointment. Our concern is that she may be beginning premature or precocious puberty. She has grown 4 inches taller over the last 4 months (not a huge jump, but still fairly significant increase) and one breast has begun to grow again. There are, however, no other indications that this is the case. To be on the safe side, we had more hormone tests taken. The doctor also had us go into radiology to have x-rays taken of her hand. Apparently the main concern with precocious puberty is that following an initial growth spurt, the growth plates close preventing further growth. In order to determine if this is occurring, they are going to look at the plates in her hand and find her bone age. However, the doctor said that there is a possibility that she is not going through precocious puberty, but that she is just releasing tiny eggs causing cysts that in turn release estrogen. Oh my! That still isn't my favorite answer.
Two weeks and I will be able to call to see if the results have come in on the CMV testing. We shall see! Also, we have decided to proceed with the wheelchair order, pushing for it to be processed this year. I am very excited now that we have officially decided. It will be such a help and Aimee will love it. Maybe we'll get it in time for Christmas...well that might be a bit optimistic, but what a nice present :). Now we just need to decide what color-Red, green or blue. Any recommendations?
11.20.10
Aimee is doing great. She had her surgery on Monday and it went way better than we could have anticipated. By the time they called me back into the recovery room she was already awake and looking around. She woke up right on time! There isn't really an explanation for it, because they used the same anesthesia as last time. At this point, it doesn't really matter why.
They did have to burn off quite a bit of granular tissue that had grown around the tubing, but it seems to be healing fairly well. She will definitely have some scaring around the site. We've been working on adjusting to a new system and I believe have all of the kinks worked out.
We received Aimee's bath chair this week and used it for the first time this morning. It is going to make bathing her SO much easier. We still don't know if we're paying for it or not at this point, but we do have the funds to cover it. At that note, the hearing aids cost has been settled completely. Hooray!
I met with the home care company on Wednesday to discuss wheelchair/stroller options. He did bring over a couple of samples to look at and try out. We really like this one chair that is around 5,000 with all the support attachments she would need. It would probably last about 2-3 years, but you can get the next size up seat to fit into the base. We are praying about it this week to make a final decision this Wednesday. We are hoping to get one ordered and through the insurance process by the end of the year. Thank you for praying with us for guidance and provision.
Monday Aimee and I are meeting with Orthopedics and Orthotics to check the progress of her feet and get new shoes. That afternoon we are also seeing the GI Nutritionist to have the blended food we've been making analyzed, see if we pass their tests. Nerve wracking!
Wednesday we are going to meet with the Adolescent Medicine department again, because she has been having some unexplained breast growth again. It is probably nothing to be concerned about, but we just want to make sure.
Happy (almost) Thanksgiving!
They did have to burn off quite a bit of granular tissue that had grown around the tubing, but it seems to be healing fairly well. She will definitely have some scaring around the site. We've been working on adjusting to a new system and I believe have all of the kinks worked out.
We received Aimee's bath chair this week and used it for the first time this morning. It is going to make bathing her SO much easier. We still don't know if we're paying for it or not at this point, but we do have the funds to cover it. At that note, the hearing aids cost has been settled completely. Hooray!
I met with the home care company on Wednesday to discuss wheelchair/stroller options. He did bring over a couple of samples to look at and try out. We really like this one chair that is around 5,000 with all the support attachments she would need. It would probably last about 2-3 years, but you can get the next size up seat to fit into the base. We are praying about it this week to make a final decision this Wednesday. We are hoping to get one ordered and through the insurance process by the end of the year. Thank you for praying with us for guidance and provision.
Monday Aimee and I are meeting with Orthopedics and Orthotics to check the progress of her feet and get new shoes. That afternoon we are also seeing the GI Nutritionist to have the blended food we've been making analyzed, see if we pass their tests. Nerve wracking!
Wednesday we are going to meet with the Adolescent Medicine department again, because she has been having some unexplained breast growth again. It is probably nothing to be concerned about, but we just want to make sure.
Happy (almost) Thanksgiving!
11.19.10
I'll update more tomorrow on the goings on of the past few weeks, but I wanted to share this video of Aimee laughing with you. Enjoy!
11.5.10
Last week, Aimee was measured for a wheelchair. We are hoping that we can get a wheelchair/stroller combination. It would be a more lightweight, adjustable chair versus the traditional, upright (more expensive) version. The company is going to bring over a couple of samples for us to try soon. Kind of exciting honestly. Aimee will really love being able to sit up all by herself and be a part of what is happening around her. I will really love having something that can carry Aimee and all of her stuff as she grows.
Wednesday, we met with the school district to set new goals for the next year. Always a challenging discussion. We don't want to set them so high that she can't reach them...it's hard to come up with goals that are small enough that we are sure they are attainable. I really focused on the area of communication for this next year. I would love to see her understand that words relate to people and objects. Knowing that I am 'mama', what a 'bath' is, that her name is 'aimee', ect. Of course, I would love her to start saying words, but I think that is too big a goal for this next year. I would love for her to sit independently, but instead I am just focusing on her head, hoping she will be able to support it independently by this time next year.
The school district wants me to take several training courses designed for parents/teachers of visually and hearing impaired children. I can't decide if I actually have the motivation to do this or not. Of course, it sounds great to learn more about stimulating learning and literacy. However, from my experiences with the trainings thus far, it is like wading through a day of information to walk out with one helpful nugget. Plus, two of the trainings are 4 days long held in Tacoma and Vancouver, WA. Hmm...
Aimee has her final surgery for the g-tube on the 15th. We will be preparing for this next week with anesthesiology and gastroenterology. The week after surgery, we will be in meeting with Orthopedics, GI Nutrition and Adolescent Medicine (not all at the same time :D).
10.26.10
Please be praying for us over these next few weeks regarding the equipment orders that we have placed already and will be placing soon. We have Aimee's hearing aids, but do not have funds to pay for them. Thankfully, we also do not yet have a bill. :) We have ordered her a bath chair, which we have been informed that the insurance will now either cover completely or not at all. Tomorrow, we will be meeting with the wheelchair company to discuss options. We are pressing to place an order by the end of the year. Aimee is within a few inches of outgrowing her stroller's capacities and at the rate she has been growing will be out by her 2nd birthday. We would like to order now, hoping that the insurance will cover more of the cost, as we have met our stop loss limit for the year. Pray for favor and a timeliness with the insurance company. We should have an idea after tomorrow of the time line and hopefully an approximate out-of-pocket cost.
10.21.10
Aimee got her new hearing aids on Tuesday, when we met with the Audiologist. As you can see, they are pink and sparkly. Girlie, for a cute girlie. She seems to really like them. She has been telling me stories all day long. None that I understand... I'm thinking they might be in gaelic. We were able to get a set that were a bit cheaper (a bit like only $2,000, instead of $3,000!) and they came with a full warranty for 3 years, including a one time replacement. Depending on how fast her ears grow, we will get new ear molds made every 4-6 months (about $200). Normally they would test her hearing that often as well, however, as we have to put her under anesthesia, they are allowing us to go for a year in between tests.
Good news this week-I was able to get through to all the departments and companies that I have been struggling to connect with for the past several weeks. We ordered Aimee's bath chair (yeah, she will be cleaned more often), set up her next surgery appointments and made an appointment for a wheel chair fitting. Ugh, what a relief to finally get through!
10.14.10
I have been somewhat remiss the past weeks in updating the blog. This has been an unusual time for us. Ed has been working a lot of hours between his day job and side jobs. Aimee and I have been waiting-waiting for test results and return phone calls. We are trying to get a few pieces of equipment ordered through difference companies and trying to schedule surgery. It seems that everyone is out finding costumes for Halloween or something! I have never had so much trouble communicating with the hospital before!
I have started making 3 of Aimee's 4 daily meals and think that I have mastered the art of getting the consistency that the pumping machine will accept. Aimee's digestive system is already showing improvement. Still working on perfecting the nutrient aspects though.
We have also borrowed a few pieces of equipment from the therapist to try at home. I fixed some broken straps on the stander this week and it is in operation. Aimee and I spent yesterday around town finding objects to decorate her 'little room'. That was a fun project. The items are as different in texture, shape and sound as I could find. She hasn't had a lot of time to get acquainted yet, but I think she'll really enjoy it.
Speaking of equipment-where am I supposed to store all of this stuff?
9.24.10
Monday, Aimee and I met with the GI Nutritionist to discuss adjusting her diet to three meals of blended food with one of the formula. I have to admit that this is one of my least favorite departments. They seem to assume that you do not understand how to get proper nutrition to your child. The nutritionist was actually surprised to see that Aimee had still been gaining weight since I took over making one of the four meals for her. She was also quite upset that I bought a different type of industrial blender than the one they told me to. Really? If it works fine and doesn't clog the tube....isn't it my choice, especially considering I'm paying for it? Well, she is checking with the doctor on that issue! :)
They have also made it quite complex to add additional meals of blended food. Each meal has to match the exact calorie, protein, carbohydrate, fat, fiber, mineral and vitamin count found in the formula. Not over the course of a day or couple of days, but every single meal. It is like they are trying to make it impossible to do. I spent all day yesterday trying to come up with exact recipes and mostly I just ended up with frustration! I have 8 weeks to figure it out. They will then perform a dietary analysis to determine if I am meeting all of her needs for the three meals out of four. Oh my! Please pray for wisdom for me as I am working through these nutritional equations.
Aimee and I attended a workshop on Thursday to learn more about IEPs (Individual Education Program). It was with a group of parents of special needs children ranging from Aimee's age to 21. Interesting to learn about how the public school system works in regard to special needs and what the current laws are regarding the programs. A bit far into the future for us, but helpful to think through the challenges that parents a few years ahead of me are facing.
Aimee's chiropractic visits are going very well. She does seem to be trying to roll over from her back to her side quite a bit more in the last couple of weeks, although it is hard to say if that is a direct result of the chiropractic adjustments.
Another area of improvement has been in her eyesight. While it is still very
difficult to say how much she is able to see, the last week or two she has been focusing for a second or two longer on our faces. She also is able to see light and movement, we think.Thank you again to everyone who has been sharing our blog and website by email and facebook. Also, a BIG thank you to those who have been praying for us and those who have supported us with gifts and funds. We are VERY blessed by each one of you and overwhelmed by God's goodness to us through you.
9.17.10
Update on this week's appointments:
Naturopathic 18 month well child exam was yesterday. Aimee is 95th+ percentile for height (33 1/2 inches tall) and 70th percentile for weight (26 pounds, 4 ounces). She is clearly growing very well! She is half my height at 18 months old. Crazy! Her head circumference also increased some. Over the last year, her head has actually grown the average amount. It is still well below the 5th percentile though. Interesting. One piece of good news from this appointment is that we no longer have to go in for weekly weight checks. Good timing, as we are now adding the 3 chiropractic visits every week!
Aimee did not have her weekly occupational therapy appointment this week, so we will continue with that next week.
This morning we met with the GI department at Children's. The surgery site has been having increasing issues with growing granular tissue and leaking fluids of all sorts. We were given a couple of prescriptions to control the growth and hopefully reverse it, as well as, to protect the skin underneath.
Next week, we will have chiropractic care, occupational therapy and the GI nutrition department.
Naturopathic 18 month well child exam was yesterday. Aimee is 95th+ percentile for height (33 1/2 inches tall) and 70th percentile for weight (26 pounds, 4 ounces). She is clearly growing very well! She is half my height at 18 months old. Crazy! Her head circumference also increased some. Over the last year, her head has actually grown the average amount. It is still well below the 5th percentile though. Interesting. One piece of good news from this appointment is that we no longer have to go in for weekly weight checks. Good timing, as we are now adding the 3 chiropractic visits every week!
Aimee did not have her weekly occupational therapy appointment this week, so we will continue with that next week.
This morning we met with the GI department at Children's. The surgery site has been having increasing issues with growing granular tissue and leaking fluids of all sorts. We were given a couple of prescriptions to control the growth and hopefully reverse it, as well as, to protect the skin underneath.
Next week, we will have chiropractic care, occupational therapy and the GI nutrition department.
Extra! Extra! Aimee's new website!
Just published today-Aimee's new website!
No, she did not create it herself. :) Two of Aimee's aunties designed www.wix.com/devoefamily/aimee so that you can see what current and upcoming needs we have for Aimee. Please feel free to share this blog and the website with anyone who is interested in keeping up with us. Thank you for your support and prayer!
(Copy and paste www.wix.com/devoefamily/aimee in your browser or retype it.)
No, she did not create it herself. :) Two of Aimee's aunties designed www.wix.com/devoefamily/aimee so that you can see what current and upcoming needs we have for Aimee. Please feel free to share this blog and the website with anyone who is interested in keeping up with us. Thank you for your support and prayer!
(Copy and paste www.wix.com/devoefamily/aimee in your browser or retype it.)
9.14.10
Aimee's BAER hearing exam was last Friday. Aimee's Nana and I waited together while Aimee was under anesthesia. The test itself was about an hour and forty minutes. The results were almost identical to her March exam. She has mild to moderate hearing impairment. It has only been 6 months since her last exam, but we were intially hoping that 6 months of development might meen some improvement in hearing abilities. She also still has the same time delay between a sound entering her ear and reaching her brain. Given the results and the vast improvement she shows while using the hearing aids, we have decided to order a permanent pair, which we will have programmed in October.
Unfortunately, Aimee decided to stay asleep for about 2 hours longer than she was supposed to, which is always a bit nerve racking. As soon as the anesthesiologist mentioned the possibility of staying over night, she started to wake up. You have to wonder about this girl sometimes!
I received the clinic note from Aimee's most recent Genetics appointment yesterday. The Angelman syndrome test came back normal, as well as the muscle disorder test. We'll see if there are any further ideas that come out of the Genetics convention.
This week we just have the chiropractic visits, 18th month wellness check-up and a GI visit to clean up the surgery site. It seems like, from this point, the visits to Children's Hospital may be backing off to one visit a week on average versus three. Wonderful!
Unfortunately, Aimee decided to stay asleep for about 2 hours longer than she was supposed to, which is always a bit nerve racking. As soon as the anesthesiologist mentioned the possibility of staying over night, she started to wake up. You have to wonder about this girl sometimes!
I received the clinic note from Aimee's most recent Genetics appointment yesterday. The Angelman syndrome test came back normal, as well as the muscle disorder test. We'll see if there are any further ideas that come out of the Genetics convention.
This week we just have the chiropractic visits, 18th month wellness check-up and a GI visit to clean up the surgery site. It seems like, from this point, the visits to Children's Hospital may be backing off to one visit a week on average versus three. Wonderful!
9.9.10
Yesterday Aimee and I were at her prep appointments for tomorrow's hearing exam. During the Otolaryngology appointment (ear/nose/throat) the doctor said she wanted to get my consent to test Aimee for Congenital CMV Disease. I had never heard of it before, but when she started describing it to me, I was very eager to try it out. It will take three months to get test results and even then they are not conclusive. Yet, I feel like this is the closest disorder we have found to date.
CMV (cytomegalovirus) is a very common viral infection, similar to mono, that a high percentage of people get during their lifetime. Most people don't even know that they have it, unless they have immune disorders. The only other time that it causes problems is when a woman contracts it for the first time while pregnant. It passes from her blood stream through the placenta and infects the baby. The most prevalent effect is hearing loss, but others are possible, including visual impairment, newborn jaundice, feeding difficulties, mental disability, microcephaly (small head), developmental delays, muscle tone abnormalities, ect.
I have always made it a rule to not research disorders that Aimee is being tested for unless she tests positive. However, this is the closest one we have found thus far...and it just would make sense if it was positive. I'll have to get back to you with the final word near the end of the year.
CMV (cytomegalovirus) is a very common viral infection, similar to mono, that a high percentage of people get during their lifetime. Most people don't even know that they have it, unless they have immune disorders. The only other time that it causes problems is when a woman contracts it for the first time while pregnant. It passes from her blood stream through the placenta and infects the baby. The most prevalent effect is hearing loss, but others are possible, including visual impairment, newborn jaundice, feeding difficulties, mental disability, microcephaly (small head), developmental delays, muscle tone abnormalities, ect.
9.7.10
We went to Aimee's follow up appointment with the chiropractor today to look over and discuss the results of last week's exam. It is really hard to tell in her case how much benefit there will be from chiropractic care, but we would like to eliminate any potential interferences with her nervous system. For the next two months we will be in his office three times a week for the initial intensive phase of adjustment. During this time we will continually re-exam her to see
if progress is being made. Of course, we will also be closely observing her behavior to watch for changes there. He has a few other disabled clients that have had major improvements under his care and we are excited to see any results. After the initial phase, we will slowly drop down from three a week to two and so on from there. The amazing news is that it will be completely free! A wonderful woman in our church has covered the costs for us. SO thankful, as it would be impossible for us to consider otherwise.
The remainder of this week will be visits preparing for Aimee's hearing exam on Friday at Children's.
9.3.10
Aimee had a chiropractic exam today to determine if there are any nerve issues that can be resolved that way. I will take her back to discuss the results on Tuesday, but she had her first adjustment after the examination. She was very good, a bit concerned about having to put her head straight down. She definitely did not think she could breath that way :). We'll see, but I am definitely willing to try more options at this point.
8.30.10
I took Aimee in for her weight check today and had the doctor take a look at the G tube site. Some granular tissue has been growing around it over the last few days. He did an initial chemical burn with some silver nitrate to try and stop the growth. Glad to find out it wasn't an infection!
8.26.10
Aimee is 18 months old today!
We really feel that she has been changing over the last few weeks. Really waking up. She is doing great with her hearing aids! Very responsive and making all kinds of new sounds. Today she only took one nap for about an hour and a half this morning. No other naps! She has been just talking and laughing all day! We started giving her blended food for her evening snacks last night. Allot of kinks to work out there, but we are up to the challenge (I hope!).
8.24.10
Last week's Adolescent Medicine appointment went really well. The ultrasound results that she received in June were really encouraging. Also, the steroid cream that we have been using worked really quickly and her breast buds have almost disappeared. We will not have to follow up with this department any more, unless we see any changes in these areas.
Yesterday, Aimee and I met with the Genetics department. The Chromosomal sequencing test came back normal as well as two tests for specific disorders. They took two more blood tests. One more for another DNA syndrome and another for a muscular disorder. We are expecting these to be normal and will receive these results in about 2 weeks.
We also had blood drawn to bank Aimee's DNA. Basically they are just freezing it a
nd keeping it on hand. In about three weeks there is a genetics convention at Children's and Aimee's case is going to be discussed. If there are any suggested DNA tests from this convention, we will not have to come back in to the hospital in order to have them done. Also, in the future, if any new tests are thought of, we will have that option.
At this point, the genetics team does think that Aimee has a genetic disorder, however, they do feel that they have ruled out the possibility of a dominate gene. This leaves us with the strongest possibility of reoccurrence being a recessive gene from both sides (25% possibility). It could also be a change in the gene, meaning that the possibility is quite slim of a reoccurrence (about 5%). Thus, with the information that we have been able to gather to this point, there is a 5-25% chance of repeat in any future children.
8.17.10
Aimee and I were at Children's yesterday for two post-op appointments. The first one was with the clinical nutritionist. I was able to convince her to allow me to replace Aimee's evening snack that is currently formula with blended real food. She said, however, that we will be required to buy a certain industrial type blender in order to do so. I just got off of the phone with our insurance company to find out if they help cover it, unfortunately they don't. Shoot! Thankfully God provides for our every need, including a 600 dollar blender!
Speaking of provision, we have been so amazed the past few weeks at the love and blessings we have received from everyone. Love has come in so many forms-Food, clothes, money, dinners and just plain encouragement. Thank you for loving us! Really, really it means so much to us and has been helping us through a challenging financial and emotional season.
We did, however, find out that we were denied for SSI this week, so that is a disappointing. Apparently Ed makes a couple hundred dollars too much monthly to qualify. At least we know now.
We also met yesterday with the GI department to check out the surgery site. Aimee is recovering really well. It appears like the site is healing nicely. We can now bath her and let her lay on her tummy again.
Tomorrow Aimee and I will be meeting with Adolescent Medicine. We'll update at the end of the week with results from that appointment. We will be following up with the nutritionist in about 5 weeks to hopefully add an additional meal of blended foods. Also, at the beginning of November, we will have a follow up procedure with the GI department to replace this temporary G tube with the permanent one. This will be a simple surgery that will not require an overnight stay (as long as she wakes up!).
8.10.10
Sorry for the delay in updating post surgery. We took Aimee in last Monday to have the PEG or G tube placed with the GI and surgery departments. The surgery itself was quite short, about 30 minutes and she was in the recovery room for about 2 hours. We finally got her room number and went up to sit in the empty room and wait. She was wheeled up in a hospital crib to her room. I very nervously picked her up off the bed. She was asleep and I knew she was on pain medication, but I still didn't want to aggravate anything. I wonder how many times in her life I will have to relearn how to hold her! At least life isn't boring!
Well we had an uneventful, but stressful night. Aimee did not wake up and had a fever. Also, her blood pressure dropped down several times. Typically they come check the patients vitals every 4 hours, but they had her on a half an hour rotation and had the different specialists coming in to give us their opinion through the night. They also did several blood tests to check for any infections. Finally, at 8:55am the following morning, Aimee woke up. She was only awake for about 10 minutes to start, but oh my were we happy for those minutes! The anesthesia that was supposed to wear off in about a 10 minute time frame ended up taking about 20 hours.
We stayed an extra night at the hospital so that they could monitor Aimee and we could transition her from the IV to tube feeding. We were released on Wednesday afternoon. Aimee seems to be recovering really well and we have been able to increase the speed of her feedings quite a bit.
We have this week off from appointments, at least the ones at Children's, which is a nice break. Next week we will be going in for her post-op appointment, a nutrition consultation and an adolescent medicine appointment.
7.27.10
Aimee and I were in the Radiology department yesterday for Upper GI imaging. Her anatomy is completely normal, which means there should be no problems performing Monday's surgery. It did appear that she refluxes the liquid that is put down by the NG tube up to her esophagus, which isn't a problem, but nice to know for during feedings.
Ed had a sleep study almost 2 weeks ago and will be going in Friday evening for a follow up consultation to discuss the results. We are really hoping to find a solution for him. For as long as he can remember he has not felt rested upon waking up, no matter how long he has slept. It makes it really difficult for him to stay awake/alert if he isn't really engaged or active.
Aimee's surgery is Monday at 1:15pm. Please be praying!
Ed had a sleep study almost 2 weeks ago and will be going in Friday evening for a follow up consultation to discuss the results. We are really hoping to find a solution for him. For as long as he can remember he has not felt rested upon waking up, no matter how long he has slept. It makes it really difficult for him to stay awake/alert if he isn't really engaged or active.
Aimee's surgery is Monday at 1:15pm. Please be praying!
7.20.10
Welcome to the world URIAH!!!!
We are so excited for all of the fun cousin times to come!
Added to the upcoming schedule:
Aimee will be going in Monday, July 26th for upper GI imaging with radiology to make sure that all of her interior anatomy is normal prior to surgery. We will go in on Thursday, July 29th for a Pre-Op appointment with the Anesthesia clinic. Her surgery is currently scheduled for the following Monday, August 2nd. We should be able to leave the hospital by Tuesday evening, August 3rd. Follow up with begin on Monday, August 16th with a Post-Op appointment with the GI department. Approximately 3 months after the initial surgery, she will have a follow up surgery to place a final tube. 'Final' in the sense that she will not need any more surgeries. It will still have to be replaced every 3 months.
This will give a whole new set of appointments to attend to (oh joy!). There is some good news with it all though-I was told that there is a possibility, once we have installed the G tube, of being able to make her food again. It will be given through the tube, but at least she will be "eating" real food instead of that canned concoction. The nurse felt it was necessary to warn me that making the food is a lot of work. Haha! I'm pretty sure I already understand how much work it is to make baby food and that it is totally worth every second! So what if I have to run the processor for an extra minute and run it through a strainer. It is still only a possibility, however, and it will have to be approved by the nutritionist post procedure.
7.15.10
Exquisite News! Our Children's/UW financial aid application was approved through the end of this year!!!! Hip Hip Hooray!!! So thankful for all of your prayers. Also, if you are ever approached to donate to Children's, please consider doing so. If you have any doubts, just watch Aimee's laughing video again. :)
Aimee and I will be meeting with the GI department on Monday to discuss having the G tube put in. Hoping it will be soon and dreading it at the same time.
Our upcoming appointments (aside from weekly weigh in and therapy):
7.19 Naturopath-dietary analysis
7.19 Gastrointestinal-consultation
8.3 Audiology-temporary hearing aid fitting
8.11 Adolescent Medicine-review of most recent ultrasound and results of using steroid cream
8.23 Genetics-review most recent DNA testing results and discuss any further potentials
8.25 Naturopath-18 month check up
9.8 Anesthesia-prepare for hearing exam
9.8 Otolaryngology-check out ears in preperation for hearing exam
9.10 Baer Hearing Exam
Aimee and I will be meeting with the GI department on Monday to discuss having the G tube put in. Hoping it will be soon and dreading it at the same time.
Our upcoming appointments (aside from weekly weigh in and therapy):
7.19 Naturopath-dietary analysis
7.19 Gastrointestinal-consultation
8.3 Audiology-temporary hearing aid fitting
8.11 Adolescent Medicine-review of most recent ultrasound and results of using steroid cream
8.23 Genetics-review most recent DNA testing results and discuss any further potentials
8.25 Naturopath-18 month check up
9.8 Anesthesia-prepare for hearing exam
9.8 Otolaryngology-check out ears in preperation for hearing exam
9.10 Baer Hearing Exam
6.29.10
We are beginning to settle into a routine with Aimee's feedings this week. Aside from the digestive issues and the concerns over the exact amount of formula that she should be receiving, the process is going well. She is being weighed weekly on Mondays. At yesterday's weigh in she had lost over a pound from the week before, but it is hard to know if that is due to the digestive problems or the amount of food. We are giving it one more week before we request an increase.
We are scheduled to go in for a consultation with the GI department in 3 weeks to discuss having a G tube put in (the one directly into her stomach). Until that point, we are supposed to carry on as "normal".
Please keep praying for us. Specifically for peace. I (Rosa) have been having several nightmares about hospitals/doctors and am really struggling with losing control and say over Aimee's future. We want to trust God...but going through the process of doing so seems to be more difficult than obtaining the desire to do so.
We are scheduled to go in for a consultation with the GI department in 3 weeks to discuss having a G tube put in (the one directly into her stomach). Until that point, we are supposed to carry on as "normal".
Please keep praying for us. Specifically for peace. I (Rosa) have been having several nightmares about hospitals/doctors and am really struggling with losing control and say over Aimee's future. We want to trust God...but going through the process of doing so seems to be more difficult than obtaining the desire to do so.
6.18.10
A piece of good news for us this week: Aimee's pediatrician is allowing us to perform her weekly weigh in on a tracked scale in his office without an appointment or co-pay. What a relief! Just the thought of an extra $30 a week was hurting my brain.
We went down for 2 ultrasounds on Wednesday to follow up on the previous findings. I just spoke with the doctor from Endocrinology this afternoon regarding the results. Overall pretty positive. The large cyst is still there, but the enlarged ovary (they start being concerned over 1.2 cm at this age, it was 4.5 cm) was back in the normal range (.06 cm). Just to be fun though, her left ovary is now enlarged (was 1.1 cm last time, now is 2.1 cm). I will follow up further on these results with Adolescent Medicine on August 11th when we are there to assess her response to the steroid/hormone cream that she is currently on.
I spoke with the Audiologist yesterday afternoon to rediscuss the hearing testing Aimee had done in March. We were finally able to come to a consensus. We will have Aimee fitted for a trial pair of hearing aids from their bank at Children's on August 3rd. There is no way to test her with the hearing aids unfortunately, due to her unique situation, so we will watch her closely for about a 6 week period to determine if the amplification is helping or hurting her. Once that period is over, we will have the Baer test again (the one that she had 3 months ago where she was put under anesthesia) and potentially place an order for permanent hearing devices.
I think that is all, but I can't be sure. May have to update again later as more comes to me.
We went down for 2 ultrasounds on Wednesday to follow up on the previous findings. I just spoke with the doctor from Endocrinology this afternoon regarding the results. Overall pretty positive. The large cyst is still there, but the enlarged ovary (they start being concerned over 1.2 cm at this age, it was 4.5 cm) was back in the normal range (.06 cm). Just to be fun though, her left ovary is now enlarged (was 1.1 cm last time, now is 2.1 cm). I will follow up further on these results with Adolescent Medicine on August 11th when we are there to assess her response to the steroid/hormone cream that she is currently on.
I spoke with the Audiologist yesterday afternoon to rediscuss the hearing testing Aimee had done in March. We were finally able to come to a consensus. We will have Aimee fitted for a trial pair of hearing aids from their bank at Children's on August 3rd. There is no way to test her with the hearing aids unfortunately, due to her unique situation, so we will watch her closely for about a 6 week period to determine if the amplification is helping or hurting her. Once that period is over, we will have the Baer test again (the one that she had 3 months ago where she was put under anesthesia) and potentially place an order for permanent hearing devices.
I think that is all, but I can't be sure. May have to update again later as more comes to me.
6.15.10
Update from last week's appointments.
-WSDS-
Monday we met with Washington Sensory Disability Services. They provided some suggestions, with which we were not entirely impressed. Mainly the specialist recommended that we get a "little room". Essentially it is made of clear plexiglass and is about 2.5 feet tall by about 3+ feet wide. We would attach different items to the inside that Aimee would become familiar with and would always know where they were. The purpose would be to block out sounds, ect that may be overwhelming to her. However, the idea of putting our child in an enclosed room is not very appealing and sounds borderline abusive to us.
She also recommended working with a speech therapist help us discover more about Aimee's communication techniques. Children that are visually and hearing impaired still communicate, but it may be with movements instead of sounds. If we can discover her communication techniques, we can respond to them, which would in turn encourage her to communicate even more.
-ENDOCRINOLOGY-
Wednesday we met with Endocrinology to follow up on testing that Aimee had received. The test results came back normal, which indicated that her increase in estrogen was most likely due to the ovarian cysts. We had also been concerned about her ovary being enlarged, however, they are not sure what is normal in the reproductive system of such a little girl, as they do not typically perform ultrasounds at this age. I am taking Aimee back in tomorrow to have a follow up ultrasound done to track the change in the cysts and the size of the ovary.
-SWALLOW STUDY-
Friday I took Aimee down for a Swallow Study. It was very interesting, almost like a video x-ray. During the study, we worked with all different consistencies of liquids and foods, as well as different types of cups, nipples and spoons to see how Aimee was handling them. Unfortunately, at the end of the study, it was determined that Aimee is not safe to take any form of liquids by mouth. Also, it appears that she very quickly is fatigued while eating solids. Essentially, she ends up breathing food and liquids into her lungs. We were admitted to spend Friday night and most of Saturday at the hospital to switch her over to a feeding tube. We had to learn how to insert the tubing and how to work with the feedings at home. This is a bit overwhelming at the moment and very disappointing for us.
We don't know for sure what happens from here in regards to her eating. We will be following up with dietitians/therapists, having her weight checked weekly, and meeting with her developmental specialist. Soon the decision will be made on whether or not to have a tube surgically implanted or not. It sounds as if this is a strong possibility.
6.3.10
Yesterday, Aimee had her weekly occupational therapy appointment, as well as, a check in with the Neurodevelopmental department at Children's.
What a discouraging day. Aimee was fairly uncooperative with the therapist in the morning. Then, at the clinic appointment, nothing happened. Or so it seemed. Basically, we rediscussed all the aspects of the situation and ended up with the doctor saying "as to the 'why' question, I really have no idea". It appears like we are about to give up on figuring it all out. We are waiting to do a few more chromosomal tests with genetics and will most likely meet with Pediatric Neurology after that (the last department that could have any light to shed). Overall though....we have come to the end of the rope. Sure we'll keep meeting with all of these different departments every couple of months so that they can track her development. There are also a few practical questions to deal with, but...essentially...that's it.
As far as the practical side, Neurodevelopmental is going to talk with Audiology to decide on hearing implements. We are meeting with Sensory Disability Services on Monday to have an assesment done with functional recommendations. Wednesday morning we will be back in Seattle to see Endocrinology regarding the reproductive questions. Friday morning we will be down at radiology to have a swallow study done.
The one piece of quasi good news is that Aimee will not have to wear a helmet. The craniofacial nurse assessed her head shape and detirmined that it would be pointless to try any implementation. She was not overly concerned about the change in shape and also the helmet works to reshape the skull as it grows. Since her skull is growing extremely slowly, this would be fairly pointless.
We will continue to update with Aimee's progress and appointments. Maybe one of these days I can actually get her laugh on video for you. It will make your heart so glad to hear it.
Ps. Please pray for favor as we are reapplying for financial aid and for SSI. We are starting to need special equipment to accommodate Aimee's size and abilities, which we will not be able to afford on our own.
What a discouraging day. Aimee was fairly uncooperative with the therapist in the morning. Then, at the clinic appointment, nothing happened. Or so it seemed. Basically, we rediscussed all the aspects of the situation and ended up with the doctor saying "as to the 'why' question, I really have no idea". It appears like we are about to give up on figuring it all out. We are waiting to do a few more chromosomal tests with genetics and will most likely meet with Pediatric Neurology after that (the last department that could have any light to shed). Overall though....we have come to the end of the rope. Sure we'll keep meeting with all of these different departments every couple of months so that they can track her development. There are also a few practical questions to deal with, but...essentially...that's it.
As far as the practical side, Neurodevelopmental is going to talk with Audiology to decide on hearing implements. We are meeting with Sensory Disability Services on Monday to have an assesment done with functional recommendations. Wednesday morning we will be back in Seattle to see Endocrinology regarding the reproductive questions. Friday morning we will be down at radiology to have a swallow study done.
The one piece of quasi good news is that Aimee will not have to wear a helmet. The craniofacial nurse assessed her head shape and detirmined that it would be pointless to try any implementation. She was not overly concerned about the change in shape and also the helmet works to reshape the skull as it grows. Since her skull is growing extremely slowly, this would be fairly pointless.
We will continue to update with Aimee's progress and appointments. Maybe one of these days I can actually get her laugh on video for you. It will make your heart so glad to hear it.
Ps. Please pray for favor as we are reapplying for financial aid and for SSI. We are starting to need special equipment to accommodate Aimee's size and abilities, which we will not be able to afford on our own.
5.27.10
Yesterday, during Aimee's weekly Occupational Therapy appointment, we met with the school district's resource coordinators for her 6 month review. As a part of the application to to the school district's program, the resource coordinators and I had set goals for Aimee. In every area from communication and motor skills to cognitive abilities, we wrote down a few hopeful targets. I am so glad that we did!
When I originally heard that her 6 month review was coming, I braced myself for major disappointment. I find myself wondering if she is changing at all. Other people always say that she is, but I just barely see it. Yet, as we sat there reviewing the goals, I was incredibly encouraged. Aimee had met almost every single goal we set for her. It was astounding to me. Visual tracking? Check. Responding to Ed and I's voices? Check. Batting at toys? Check. Cooing? Check. Verbalizing moods? Check. And so on. She kept knocking them out of the park! WOW! Good job Aimee. A++++++ on your report card!
When I originally heard that her 6 month review was coming, I braced myself for major disappointment. I find myself wondering if she is changing at all. Other people always say that she is, but I just barely see it. Yet, as we sat there reviewing the goals, I was incredibly encouraged. Aimee had met almost every single goal we set for her. It was astounding to me. Visual tracking? Check. Responding to Ed and I's voices? Check. Batting at toys? Check. Cooing? Check. Verbalizing moods? Check. And so on. She kept knocking them out of the park! WOW! Good job Aimee. A++++++ on your report card!
5.25.10
We made it through a lap of appointments yesterday and as you can see one of us made it through smiling!We finally got Ed in for an appointment with the Naturopath to figure out his sleep issues. He will be going in for a sleep study and blood work to determine if he has sleep apnea or a strain of narcolepsy. The doctor actually thinks it is likely sleep apnea and may be as simple as removal of his tonsils. If this is the case, it would be a huge relief, as he has been struggling with major fatigue his whole life.
Aimee also met with the Naturopathic Pediatrician in the morning for her 15 month check up. She is staying on track with her physical health. She weighed in at 23 pounds (50th percentile) and she is quite tall at 32 inches (90th). Her head is still growing well below the curve at 42.5 centimeters (still growing though!). The only concern that the was raised during this appointment was her head shape. Owing to the fact that she is unable to support her own head, she is continually putting pressure against one side of her skull. It is starting to flatten on the the sides and back slightly. We may go back to Craniofacial to discuss the options for positioning pillows and a helmet.
Next, we met with Genetics. No new information here. All the blood tests that have been run thus far have come back normal. They requested 2 new DNA studies to be done for 2 syndromes that have similar symptoms to Aimee's case. Again, these will take a few weeks to find out if insurance will cover them and then a couple of months to get results. A swallow study was also ordered to be sure that Aimee's low muscle tone isn't causing her to literally inhale food/liquids when she is eating. This may also provide helpful tips for us on the consistency of food/liquids that would be best for her. We were also able to get temporary disability codes to apply for SSI and reapply for financial aid. These will be adjusted when a true diagnosis is found.
After that appointment we met with Orthopedics. This was actually a nice, quick appointment. The doctor said that her feet and joints look beautiful. He was so pleased that he pushed back her next check up with him for 6 months. We are not dissapointed to have one less appointment to drive down for!
Checked on Orthotics and everything looks great there. We will not need a new bar or shoes for a few months.
This next week we will be with Occupational Therapy and Neurodevelopmental. We are praying for God to bring wisdom to the doctors and unravel this conundrum. Feeling a bit overwhelmed myself. I am fairly certain that my brain is crossing wires and confusing signals. Also, please be praying for Ed and I. In the midst of all the pulls for our time and attention, we don't want to lose sight of eachother.
5.13.10
Received the blood work results back from Endocrinology yesterday by mail. The letter simply stated that all the results were normal and that we would hear more at the follow up appointment with this department on June 9th. Honestly, I'm not sure what this means.
I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!
Our next big appointment day is May 24th. I will update again after that.
I have recently received several applications to attend seminars and retreats for families with blind or severely visually impaired children. It reminds me of why we are hoping to find a diagnosis. Without it we can't apply for disability or obtain approvals for these other types of resources. Lord, give us the perseverance!
Our next big appointment day is May 24th. I will update again after that.
4.22.10
Yesterday was our appointment with Adolescent Medicine, which actually turned out to be an appointment with a Pediatric/Adolescent Gynecologist and an Endocrinologist (hormones). The quick rundown of the appointment is that we are having more testing done. There may be something to the issues with her reproductive system, but it may be that will go away on its own. We will get more information after the initial test results come back in a month or so. It doesn't sound like we will be getting a definitive diagnosis from these tests for her overall problems, rather that these problems are side effects of the bigger issue.
If you would like to read a more detailed version, I'll include that too. Aimee's appointment was with the gynecologist, however, she just happened to have an endocrinologist attending her appointments with her for the day. We were meeting with this department for two different reasons. First, that the vaginal opening was not apparent. Second, there were several cysts on one of her ovaries. Neither one of these issues is a major cause for concern on its own. However, we also discovered while we were there that she has some breast buds forming. Add that on top of the other two issues and we could have a bigger problem.
Basically, there are 3 different potential causes:
We had a few blood tests taken yesterday to look for indicators of one of the first 2 possibilities. They are concerned that it may be a brain issue, since we do know that her brain is not developing normally. We have to wait to treat the vaginal issue until we know which of the above is happening, because they use steroids and/or hormones as a treatment. However, we can't wait too long, because there is a potential that the problem could develop further and not allow her to urinate. If this happens, she would have to go in for an emergency surgery.
Her therapy appointment went well yesterday. She was very responsive, despite having already been through several hours of appointments that day.
Upcoming appointments:
Also, please pray for Ed and I. The length and slowness of the process is really taxing and there does not seem to be an end/answer in sight. Aimee seems to be doing well through it all. The appointment days are a bit much for her, but she recovers quickly.
Thank you for your support!
If you would like to read a more detailed version, I'll include that too. Aimee's appointment was with the gynecologist, however, she just happened to have an endocrinologist attending her appointments with her for the day. We were meeting with this department for two different reasons. First, that the vaginal opening was not apparent. Second, there were several cysts on one of her ovaries. Neither one of these issues is a major cause for concern on its own. However, we also discovered while we were there that she has some breast buds forming. Add that on top of the other two issues and we could have a bigger problem.
Basically, there are 3 different potential causes:
- Her brain is telling her body that it is time to go through puberty, causing cysts and breasts to form.
- Her thyroid is messing up the production of appropriate levels of hormones, causing cysts and breasts form.
- The cysts, which are pockets of estrogen, could be raising the overall levels of estrogen in her body, causing a temporary swelling of the breasts.
We had a few blood tests taken yesterday to look for indicators of one of the first 2 possibilities. They are concerned that it may be a brain issue, since we do know that her brain is not developing normally. We have to wait to treat the vaginal issue until we know which of the above is happening, because they use steroids and/or hormones as a treatment. However, we can't wait too long, because there is a potential that the problem could develop further and not allow her to urinate. If this happens, she would have to go in for an emergency surgery.
Her therapy appointment went well yesterday. She was very responsive, despite having already been through several hours of appointments that day.
Upcoming appointments:
- Occupational Therapist at home Wednesdays
- Washington Sensory Disability Services 5.10.10 (tentative)
- Visual Disability Specialist 5.17.10 (tentative)
- 15 month check up with Naturopathic Pediatrician 5.24.10
- Genetics 5.24.10
- Orthopedic 5.24.10
- Orthotics 5.24.10
- Neurodevelopmental 6.2.10
- Audiology 6.3.10 (tentative)
- Endocrinology 6.9.10
Also, please pray for Ed and I. The length and slowness of the process is really taxing and there does not seem to be an end/answer in sight. Aimee seems to be doing well through it all. The appointment days are a bit much for her, but she recovers quickly.
Thank you for your support!
4.16.10
What's next?
Wish I had an intelligent answer to that question. Instead, all I have are more specialists, who like me, do not have an intelligent answer. I met with our resource coordinator on Wednesday. We are lining up to meet with 3 new local specialists. One is the area representative for the Washington Sensory Disability Services. She will be coming over and giving us specific suggestions on how to make the most of Aimee's sensory abilities. We will also be meeting with a doctor from Mount Vernon who specializes in visual disabilities. After that, we will be meeting with a woman from the school district who represents students/children that have hearing disabilities. At least we don't have to wait for a diagnosis to begin constructive, practical planning!
Next Wednesday, April 21st, Aimee and I are going in to meet with Adolescent Medicine for the first time. It seems very strange to me to meet with this department. The description on the Seattle Children's website says "Adolescent Medicine is the care of people in and around their teen years, from about ages 9 to 21 years...Our team is expert in attending to the physical, emotional and social needs of people from puberty though young adulthood." Hmm. While I realize that her ovaries are a part of her reproductive system and thus are related to adolescence, it still seems odd at this time. I have to wonder, is this really necessary or are we grabbing at straws? How helpful is this going to be? I guess we will find out on Wednesday.
Wish I had an intelligent answer to that question. Instead, all I have are more specialists, who like me, do not have an intelligent answer. I met with our resource coordinator on Wednesday. We are lining up to meet with 3 new local specialists. One is the area representative for the Washington Sensory Disability Services. She will be coming over and giving us specific suggestions on how to make the most of Aimee's sensory abilities. We will also be meeting with a doctor from Mount Vernon who specializes in visual disabilities. After that, we will be meeting with a woman from the school district who represents students/children that have hearing disabilities. At least we don't have to wait for a diagnosis to begin constructive, practical planning!
Next Wednesday, April 21st, Aimee and I are going in to meet with Adolescent Medicine for the first time. It seems very strange to me to meet with this department. The description on the Seattle Children's website says "Adolescent Medicine is the care of people in and around their teen years, from about ages 9 to 21 years...Our team is expert in attending to the physical, emotional and social needs of people from puberty though young adulthood." Hmm. While I realize that her ovaries are a part of her reproductive system and thus are related to adolescence, it still seems odd at this time. I have to wonder, is this really necessary or are we grabbing at straws? How helpful is this going to be? I guess we will find out on Wednesday.
4.6.10
Had a little appointment for Aimee this morning with her Naturopathic Pediatrician. She has had some strange genital sores for the last few weeks and I finally gave up trying to get rid of them myself when they started spreading. Turns out it is just an infection caused by a combination of factors, including the fact that she is such a good sleeper and eater. Kind of funny, but because she sleeps so long at night and eats such a variety of foods (especially the acidic foods), there is a wider range of bacterias that are against her skin for too long of a time. The doctor recommended that I use disposable diapers at night, as we definitely don't want to limit her diet or wake her up in the middle of the night to change her diaper.
Honestly, I was a bit dissapointed. Really, it isn't much, but it just means we have to buy disposable diapers and add to land fills. We have been trying to do our little part and reuse as much as possible...I know it is such a small thing...I just hate to "give in". If it had been any other doctor I would have argued, but I know Dr Cowan used cloth diapers with his kids and definitely agrees with us using them in general.
Funny how the little things get to you! As if it somehow negates us using cloth in general, because we will be using one disposable a day! I think my reaction is because of all the negative responses that I get to using cloth. It was the same with having her at home or pumping breastmilk...people feel that I am judging their choices, just because I believe that it's okay to not choose the most conveinant option. I wish people didn't feel judged, rather that they felt encouraged to rethink their own choices. Maybe no one will change their actions, but I hope they at least realize that they are making a choice, even if their only motivation is conveinance. Sometimes easy is just too good of an option to pass up.
Honestly, I was a bit dissapointed. Really, it isn't much, but it just means we have to buy disposable diapers and add to land fills. We have been trying to do our little part and reuse as much as possible...I know it is such a small thing...I just hate to "give in". If it had been any other doctor I would have argued, but I know Dr Cowan used cloth diapers with his kids and definitely agrees with us using them in general.
Funny how the little things get to you! As if it somehow negates us using cloth in general, because we will be using one disposable a day! I think my reaction is because of all the negative responses that I get to using cloth. It was the same with having her at home or pumping breastmilk...people feel that I am judging their choices, just because I believe that it's okay to not choose the most conveinant option. I wish people didn't feel judged, rather that they felt encouraged to rethink their own choices. Maybe no one will change their actions, but I hope they at least realize that they are making a choice, even if their only motivation is conveinance. Sometimes easy is just too good of an option to pass up.
3.23.10
Audiology Update:
I was able to talk to the doctor today who performed Aimee's hearing exam on the 12th. The conversation was similar to the one we had after the exam. The doctor had discussed the situation with her colleagues, however, was still uncertain what is the best course of action. The big question is, if and when her myelin develops will it improve her hearing?
We are meeting with Genetics at the end of May and Neurodevelopmental at the beginning of June. We should also be meeting with the Washington Sensory Disability Services around that time. Since the situation is not cut and dry, the audiology doctor and I will touch basis again after those appointments to discuss next steps. We are hoping that her behavorial development will change enough over the next 6 months that we can do functional testing rather than putting her back under aenesthetic. We will most likely retest her using one of those two options in early September. If her hearing has not improved significantly, we will have her fitted for hearing implements.
Next stop, Adolescent Medicine!
I was able to talk to the doctor today who performed Aimee's hearing exam on the 12th. The conversation was similar to the one we had after the exam. The doctor had discussed the situation with her colleagues, however, was still uncertain what is the best course of action. The big question is, if and when her myelin develops will it improve her hearing?
We are meeting with Genetics at the end of May and Neurodevelopmental at the beginning of June. We should also be meeting with the Washington Sensory Disability Services around that time. Since the situation is not cut and dry, the audiology doctor and I will touch basis again after those appointments to discuss next steps. We are hoping that her behavorial development will change enough over the next 6 months that we can do functional testing rather than putting her back under aenesthetic. We will most likely retest her using one of those two options in early September. If her hearing has not improved significantly, we will have her fitted for hearing implements.
Next stop, Adolescent Medicine!
3.19.10
I finally got the results from the ultrasound today. We were told that she has a normal uterus and that both ovaries were identified, however, her right ovary was enlarged and contained several cysts. This in itself is most likely not a cause for concern, but it can be sign of other problems. So, we are scheduling an appointment to meet with Adolescent Medicine to discuss the issues that we have found in her reproductive areas and possibly have imaging done of her lower spine.
I have not heard back from the Audiology department regarding their recommendation for Aimee's ears. We should be making a decision on that in the next week.
Therapy appointments are going well. We will be having a couple of specialists come talk with us that are associated with Washington Sensory Disability Services. Aimee is a little puzzle and we are taking advice from anyone willing to give it! Only wish there were more hints!
I have not heard back from the Audiology department regarding their recommendation for Aimee's ears. We should be making a decision on that in the next week.
Therapy appointments are going well. We will be having a couple of specialists come talk with us that are associated with Washington Sensory Disability Services. Aimee is a little puzzle and we are taking advice from anyone willing to give it! Only wish there were more hints!
3.13.10
We spent yesterday afternoon at the surgery center with Aimee. She was put under anesthesia for about 2.5 hours while they checked out her hearing abilities. Always a nerve racking experience! Aimee did really well, aside from trying to get away from the dreaded mask with the "magic air". Also, we had the same anesthesiologist as we did for the Brain MRI. Aimee has difficult veins to get an IV into and thankfully this doctor had made a note as to which vein had ended up working for the MRI. So she was only attacked once with the needle!
After the procedure, we met with the doctor while Aimee was coming to. A lot of the information went over our heads, but the gist of it was that Aimee does have a delay between the time that sounds enter her ear and when they reach her brain. This is due to the insufficient amount of myelin. Also, she has mild hearing loss in both ears. In lower tones, her loss is mild to moderate and in higher tones, it is more slight to mild.
At close proximity, Aimee can hear everything just fine. Depending on the tone and the amount of background noise, she can also hear from a distance. So if you are holding her or near her, she can hear you talking.
Our options at this point are either to have hearing aids made for her or to have her tested again in 6 months to see where we are at before making a decision. The doctor is going to confer with her colleagues and get back to us on Monday before giving us her recommendation.
We are undecided at this point as well. We definitely want to give Aimee every advantage possible, but do not want to rush into any decisions. The loss is slight and it may be directly linked to the myelin issue. If it is and we were to get her hearing aids, there is a potential that her abilities would change and we would be magnifying sounds to high.
Ugh decisions...
After the procedure, we met with the doctor while Aimee was coming to. A lot of the information went over our heads, but the gist of it was that Aimee does have a delay between the time that sounds enter her ear and when they reach her brain. This is due to the insufficient amount of myelin. Also, she has mild hearing loss in both ears. In lower tones, her loss is mild to moderate and in higher tones, it is more slight to mild.
At close proximity, Aimee can hear everything just fine. Depending on the tone and the amount of background noise, she can also hear from a distance. So if you are holding her or near her, she can hear you talking.
Our options at this point are either to have hearing aids made for her or to have her tested again in 6 months to see where we are at before making a decision. The doctor is going to confer with her colleagues and get back to us on Monday before giving us her recommendation.
We are undecided at this point as well. We definitely want to give Aimee every advantage possible, but do not want to rush into any decisions. The loss is slight and it may be directly linked to the myelin issue. If it is and we were to get her hearing aids, there is a potential that her abilities would change and we would be magnifying sounds to high.
Ugh decisions...
3.9.10 update
Alright one more note to add:
I just spoke to the nurse and she said we definitely will not be able to stay with her during the procedure and we may have to leave before she goes to sleep and come back after she wakes up...ugh I feel sick. They say it so casually...you'll be able to go get a bite to eat and read a book...do you really think that is what I want to do? Sure I trust you (kind of) in a doctor kind of way, but do I want to leave you alone with my baby girl or want her to fall asleep alone with strange people? On top of that she can't eat for 7 hours before hand. Hungry, alone baby. Who comes up with these ridiculous ideas! :(
Okay, enough venting. :)
I just spoke to the nurse and she said we definitely will not be able to stay with her during the procedure and we may have to leave before she goes to sleep and come back after she wakes up...ugh I feel sick. They say it so casually...you'll be able to go get a bite to eat and read a book...do you really think that is what I want to do? Sure I trust you (kind of) in a doctor kind of way, but do I want to leave you alone with my baby girl or want her to fall asleep alone with strange people? On top of that she can't eat for 7 hours before hand. Hungry, alone baby. Who comes up with these ridiculous ideas! :(
Okay, enough venting. :)
3.9.10
Couple of quick updates:
- Aimee's most recent blood test results came back normal. They tested her long chain fatty acids and did a more intensive version of the cholesterol test.
- Have not gotten the results for the x-rays done on her hands and wrists as of yet.
- Pelvic ultrasound of her uterus and ovaries was yesterday with Radiology. Should have the results by the end of the week.
- Tomorrow (Wednesday), Aimee and I are going in for 2 appointments to prepare for her Friday's procedure. The first will be a simple hearing exam with the Otolaryngology department. The second will be an appointment with the Anesthesiologist.
- Friday afternoon will be her appointment with Audiology for the actual test itself. She will be put under for a few hours and they will test her brain responses to sounds. I am assuming this will be a mix between the experiences with the eye exams and the brain MRI. Hopefully we will be able to stay with her the whole time. I don't like taking her down there for appointments when I'm not sure what to expect. She probably can't understand me, but I always tell her on the way what will happen. Sometimes all you can say is, "I don't know exactly what is going to happen, but I can promise you that I am not going to leave you, even if you can't see me for a little while."
2.25.10
Breakdown of this week's appointments:
Genetics:
Wish we had been better prepared to answer so many questions about our family history. We were only ready with what we had thought related to Aimee's symptoms. Oops. Hope we answered everything correctly!
Essentially, we are starting a new round of testing. We were there for about 4 hours getting blood tests drawn and x-rays done on her hands and wrists. They will also be doing an ultrasound or a CT scan on her abdomen, ovaries and uterus. Possibly x-rays on her ankles and feet. A few blood tests. Another set of hearing exams. No "ah ha" moments yet, but this is definitely approaching things from a different angle. The doctor did a very detailed examination and took lots of photographs. She even discovered a few abnormalities we were not aware of ourselves. Sounds like they will also be looking into the likelihood of a repeat in future children.
Orthotics:
They set us up with another new pair of shoes. Only bad news is that she will most likely be wearing them until she is four.
Orthopedics:
According to the doctor, she has a beautiful right foot. He is just proud of his work I think. Her left foot still has some toe issues, but at this point they are not too concerned with it. Her tendons, muscle tone and shape all look great.
Please pray for our finances. Children's is not charging us for any of the above through the end of June, at which point we can apply for more financial aid. However, it seems silly to say, but the cost of getting to Seattle for all of the appointments has been challenging on our budget. We have also had several small vehicle and appliance repair issues lately. It all adds up...or doesn't unfortunately.
Thank you for your continued prayers for Aimee's health and development!
Genetics:
Wish we had been better prepared to answer so many questions about our family history. We were only ready with what we had thought related to Aimee's symptoms. Oops. Hope we answered everything correctly!
Essentially, we are starting a new round of testing. We were there for about 4 hours getting blood tests drawn and x-rays done on her hands and wrists. They will also be doing an ultrasound or a CT scan on her abdomen, ovaries and uterus. Possibly x-rays on her ankles and feet. A few blood tests. Another set of hearing exams. No "ah ha" moments yet, but this is definitely approaching things from a different angle. The doctor did a very detailed examination and took lots of photographs. She even discovered a few abnormalities we were not aware of ourselves. Sounds like they will also be looking into the likelihood of a repeat in future children.
Orthotics:
They set us up with another new pair of shoes. Only bad news is that she will most likely be wearing them until she is four.
Orthopedics:
According to the doctor, she has a beautiful right foot. He is just proud of his work I think. Her left foot still has some toe issues, but at this point they are not too concerned with it. Her tendons, muscle tone and shape all look great.
Please pray for our finances. Children's is not charging us for any of the above through the end of June, at which point we can apply for more financial aid. However, it seems silly to say, but the cost of getting to Seattle for all of the appointments has been challenging on our budget. We have also had several small vehicle and appliance repair issues lately. It all adds up...or doesn't unfortunately.
Thank you for your continued prayers for Aimee's health and development!
02.18
Aimee had her 1 year check up this morning with Dr Cowan at Skagit Natural Family Medicine. She is making great physical growth progress. She is now 30" tall (75th percentile), 21lbs 4 oz (50th) and her head is still well below, but following the curve at 41 1/2 cm.
The doctor said she is eating solids so well that we can wean her off of breastmilk and formula to organic whole milk (hooray!).
Also, yesterday in her Occupational Therapy appointment, Aimee was really responsive and trying to work with the OT on rolling over. It was great to see her actually desiring to do it and figuring out some of the muscles.
I will update again next week after her appointment with Genetics and Orthopedics.
The doctor said she is eating solids so well that we can wean her off of breastmilk and formula to organic whole milk (hooray!).
Also, yesterday in her Occupational Therapy appointment, Aimee was really responsive and trying to work with the OT on rolling over. It was great to see her actually desiring to do it and figuring out some of the muscles.
I will update again next week after her appointment with Genetics and Orthopedics.
About Aimee
What We Say:
-Aimee is peaceful in the midst of storms. Her attitude is primarily full of delight, relaxation, and joy.
-Aimee holds the world title for best cuddler.
-Aimee is ticklish and she laughs at the sounds that make the rest of us cringe (screaming sibling, smoke alarm, fire engine, train whistles, high pitched tools).
-Aimee likes to hold hands and squeeze fingers.
-Aimee recognizes voices.
-Aimee is bright. She protects herself by going to sleep when she is scared, overwhelmed, or unsure of her surroundings.
-Aimee is self motivated. No matter how hard it is and how many times she cannot do it, she continually tries to hold up her head.
-Aimee is beautiful.
-Aimee is a ballerina at heart.
-Aimee likes country music, 50's, and 80's.
-Aimee is a mystery worth spending a lifetime researching.
-Aimee is limited and challenged; God is unlimited and not challenged by her situation.
-We love Aimee!
What The Doctors Say:
-Severe Developmental Delay- Aimee has developed to the abilities of a 2-3 month old baby. They expect her to remain at this "age" for the rest of her life.
-Microcephaly- Aimee has a very small head (.26 percentile) due to her lack of brain growth since birth. The growth in her face has been disproportionate and is causing little issues, for example her tear ducts have been forced to narrow and are continually clogged despite probing and stints.
-Delayed Myelination- The wiring that runs signals through the brain is coated with a substance called myelin, which allow these signals to run through quickly and to the correct place. When Aimee was a baby her myelin was severely underdeveloped, which did not allow her brain to form the connections it should have been learning to make at that time. The doctors believe this is just a symptom of her overall disorder, which is undiagnosed.
-Hypotonic- She has very low muscle tone, not lack of strength, but her muscles are too loose which keeps her from building strength. This causes lots of secondary issues, such as scoliosis.
-At Risk for Aspiration- Due to the low tone in her throat and mouth, it is considered unsafe for Aimee to take food and fluids by mouth. She has a feeding tube and receives a home blended diet through that. She also fights to deal with secretions like phlegm and saliva, which we use a suction machine to clear in order to protect her airway.
-Sleep Apnea and Hypoventilation- Also due to the low muscle tone, Aimee struggles to breath adequately while she sleeps. She retains excess carbon dioxide in her blood stream due to shallow breathing. She has been very sleepy her whole life and we think waking up hundreds of times a night is part of the cause. She is on a BiPap machine.
-High Risk for Respiratory Infection- Again due to the low muscle tone and her inability to handle secretions, the doctors' statistics give her a slim chance of living to adulthood, expecting her to begin to fight with pneumonias and eventually lose that fight. She is on steroid inhalers to help her prepare to fight the many illnesses that come her way.
-Chronic Constipation- Yet again due to the low muscle tone, Aimee needs help from medications, aside from lots of dietary supplements, to keep waste moving out.
-Congenital Bilateral Club Feet- She was born with club feet that were corrected through treatment.
-Hearing Impairment- She has mild to moderate hearing impairment in her both ears and wears bilateral hearing aids especially to hear lower tones.
-Cortical Vision Impairment- Her brain is unable to get many visual signals through, meaning her eyes see well and send the signal to the vision center, but her brain looses the information or can't interpret it most of the time.
-General and Localized Seizures- Aimee has multiple different types of seizures, both general tonic seizures that involve her whole brain at once and localized seizures that are only one part of her brain at a time. She is on a couple different medications to control them.
-Reflux- Partly due to muscle tone and partly due to constipation, Aimee struggles with reflux and is on strong medication to combat it.
-Aimee is peaceful in the midst of storms. Her attitude is primarily full of delight, relaxation, and joy.
-Aimee holds the world title for best cuddler.
-Aimee is ticklish and she laughs at the sounds that make the rest of us cringe (screaming sibling, smoke alarm, fire engine, train whistles, high pitched tools).
-Aimee likes to hold hands and squeeze fingers.
-Aimee recognizes voices.
-Aimee is bright. She protects herself by going to sleep when she is scared, overwhelmed, or unsure of her surroundings.
-Aimee is self motivated. No matter how hard it is and how many times she cannot do it, she continually tries to hold up her head.
-Aimee is beautiful.
-Aimee is a ballerina at heart.
-Aimee likes country music, 50's, and 80's.
-Aimee is a mystery worth spending a lifetime researching.
-Aimee is limited and challenged; God is unlimited and not challenged by her situation.
-We love Aimee!
What The Doctors Say:
-Severe Developmental Delay- Aimee has developed to the abilities of a 2-3 month old baby. They expect her to remain at this "age" for the rest of her life.
-Microcephaly- Aimee has a very small head (.26 percentile) due to her lack of brain growth since birth. The growth in her face has been disproportionate and is causing little issues, for example her tear ducts have been forced to narrow and are continually clogged despite probing and stints.
-Delayed Myelination- The wiring that runs signals through the brain is coated with a substance called myelin, which allow these signals to run through quickly and to the correct place. When Aimee was a baby her myelin was severely underdeveloped, which did not allow her brain to form the connections it should have been learning to make at that time. The doctors believe this is just a symptom of her overall disorder, which is undiagnosed.
-Hypotonic- She has very low muscle tone, not lack of strength, but her muscles are too loose which keeps her from building strength. This causes lots of secondary issues, such as scoliosis.
-At Risk for Aspiration- Due to the low tone in her throat and mouth, it is considered unsafe for Aimee to take food and fluids by mouth. She has a feeding tube and receives a home blended diet through that. She also fights to deal with secretions like phlegm and saliva, which we use a suction machine to clear in order to protect her airway.
-Sleep Apnea and Hypoventilation- Also due to the low muscle tone, Aimee struggles to breath adequately while she sleeps. She retains excess carbon dioxide in her blood stream due to shallow breathing. She has been very sleepy her whole life and we think waking up hundreds of times a night is part of the cause. She is on a BiPap machine.
-High Risk for Respiratory Infection- Again due to the low muscle tone and her inability to handle secretions, the doctors' statistics give her a slim chance of living to adulthood, expecting her to begin to fight with pneumonias and eventually lose that fight. She is on steroid inhalers to help her prepare to fight the many illnesses that come her way.
-Chronic Constipation- Yet again due to the low muscle tone, Aimee needs help from medications, aside from lots of dietary supplements, to keep waste moving out.
-Congenital Bilateral Club Feet- She was born with club feet that were corrected through treatment.
-Hearing Impairment- She has mild to moderate hearing impairment in her both ears and wears bilateral hearing aids especially to hear lower tones.
-Cortical Vision Impairment- Her brain is unable to get many visual signals through, meaning her eyes see well and send the signal to the vision center, but her brain looses the information or can't interpret it most of the time.
-General and Localized Seizures- Aimee has multiple different types of seizures, both general tonic seizures that involve her whole brain at once and localized seizures that are only one part of her brain at a time. She is on a couple different medications to control them.
-Reflux- Partly due to muscle tone and partly due to constipation, Aimee struggles with reflux and is on strong medication to combat it.
2.5.10
We are having a difficult challenge this week in seeing our good friends go through some of the things we have been through. Their new little baby boy (born on Feb 2nd) is down at Children's (I should say trapped, cause that is what happens once your baby is admitted to the hospital) trying to find a suitable solution for his overworking heart.
I can't say how much of a struggle it has been for me as friends come closer and closer to their due dates. I am so nervous to have "normal", "average" babies around. It's okay to just see them in passing, but what about when we watch them grow...and watch them pass up Aimee, even though they are a year younger or more.
On the other hand, I don't want my dear friend to have to go through anything that we have had to. I would much rather have the awkwardness of seeing her little boy grow, than the pain of watching from the sidelines...knowing so much of what is going on in her heart. Wasn't it enough for us to go through it? Did it not spare anyone else from the pain? Unfortunately, it doesn't look like it did.
Please pray for Corbin and his parents. Pray for peace and speedy answers.
I can't say how much of a struggle it has been for me as friends come closer and closer to their due dates. I am so nervous to have "normal", "average" babies around. It's okay to just see them in passing, but what about when we watch them grow...and watch them pass up Aimee, even though they are a year younger or more.
On the other hand, I don't want my dear friend to have to go through anything that we have had to. I would much rather have the awkwardness of seeing her little boy grow, than the pain of watching from the sidelines...knowing so much of what is going on in her heart. Wasn't it enough for us to go through it? Did it not spare anyone else from the pain? Unfortunately, it doesn't look like it did.
Please pray for Corbin and his parents. Pray for peace and speedy answers.
1.29.10
Aimee loves clothe diapers as much as we do!
Ed & Aimee ready to root for the JETS!
Quick Update:
We have an occupational therapist coming over every Wednesday to work with Aimee on her activity level, especially her head control. Once a month, we also have a visit from a resource coordinator from the school district. It is amazing how many different state departments there are for disabilities. It seems like every visit she is bringing over a new service to contact.
February 18th:
12 month checkup with Dr Cowan, the naturopathic doctor.
February 22nd:
Appointment with the Genetics team at Children's to reanalyze the testing that has been done to date.
February 24th:
Appointment with Dr Mosca, the orthopedic doctor at Children's, to check the progress of her feet.
February 26th:
Aimee's 1st Birthday! I can't believe it is almost here!
1.8.10
We had several appointments this week...ugh...
Wednesday we had a couple Occupational Therapy visits. Aside from having to look through several special equipment catalogs (how much space do they think we have?), they went well. New exercises to try. Aimee seems to be getting more comfortable with the therapist that comes to our home and we are getting a lot of great ideas.
We also met with the Neurodevelopmental clinic on Wednesday. We had a few more blood tests done for mitochondrial disorders (mitochondria helps to make the energy that runs organs, fuel growth, ect), as well as, a test for retS (a disorder in girls with small heads that is found in the 7th chromosome and blocks proteins). I got both of these tests results back this morning and they were all normal.
Aimee, Grandma Annette and I went yesterday to have eye exams done at Childrens. The first was a brain wave test to analyze how far the information obtained through her eyes is traveling and if it is being processed when it gets there. Despite Aimee's attempts to sleep through this test, we managed to get solid results. The doctor seemed quite surprised to tell us that they were normal. Slightly delayed responses, but normal. The delay is most likely due to the insufficient myelin.
The rest of the testing that was to be done yesterday was an Eye Movement Study, which Aimee successfully blocked out. We were unable to wake her out of her opposum like sleep in order to complete the exams. (Interesting side note: she was hooked up to the machine when she went into her first deep sleep. The doctor said she went immediately into a dream state.)
Essentially, this is what we know:
-Aimee can see and process what she sees with a slight time delay.
-She has tested normal in all areas, aside from the size of her brain/development of the myelin sheaths. This is a really good thing, because if any of the tests had come back with abnormal results it would have meant her brain would not be able to catch up.
-As it stands, we will be meeting with Genetics to be sure that all the information has been looked through and to determine the likelihood of the same challenge happening with future children.
-The critical point for creating myelin is by 3 years old. By this point, she will be permanently caught up, partially behind or stay where she is at currently. At 3, we will do another brain MRI to determine which of the these has happened and from this we can determine what point she will be able to develop physically and mentally.
-There is nothing special we can do to make the myelin get thicker faster.
-We will continue to meet with therapists to stimulate her development and neurodevelopmental doctors to track her changes in every area.
All that to say...we don't know much.
Aimee could catch up and be normal, simply using her own time clock for development.
or Aimee could be a year behind the average kids.
or Aimee could stay under developed.
No matter which of the above happens, the truth is that Aimee is lovely and a rich blessing to our family. We are having fun playing with her as she is becoming more interactive. Please pray that we would learn to completely enjoy her for who God has made her to be and that His purpose would be made perfect in her life.
Wednesday we had a couple Occupational Therapy visits. Aside from having to look through several special equipment catalogs (how much space do they think we have?), they went well. New exercises to try. Aimee seems to be getting more comfortable with the therapist that comes to our home and we are getting a lot of great ideas.
We also met with the Neurodevelopmental clinic on Wednesday. We had a few more blood tests done for mitochondrial disorders (mitochondria helps to make the energy that runs organs, fuel growth, ect), as well as, a test for retS (a disorder in girls with small heads that is found in the 7th chromosome and blocks proteins). I got both of these tests results back this morning and they were all normal.
Aimee, Grandma Annette and I went yesterday to have eye exams done at Childrens. The first was a brain wave test to analyze how far the information obtained through her eyes is traveling and if it is being processed when it gets there. Despite Aimee's attempts to sleep through this test, we managed to get solid results. The doctor seemed quite surprised to tell us that they were normal. Slightly delayed responses, but normal. The delay is most likely due to the insufficient myelin.
The rest of the testing that was to be done yesterday was an Eye Movement Study, which Aimee successfully blocked out. We were unable to wake her out of her opposum like sleep in order to complete the exams. (Interesting side note: she was hooked up to the machine when she went into her first deep sleep. The doctor said she went immediately into a dream state.)
Essentially, this is what we know:
-Aimee can see and process what she sees with a slight time delay.
-She has tested normal in all areas, aside from the size of her brain/development of the myelin sheaths. This is a really good thing, because if any of the tests had come back with abnormal results it would have meant her brain would not be able to catch up.
-As it stands, we will be meeting with Genetics to be sure that all the information has been looked through and to determine the likelihood of the same challenge happening with future children.
-The critical point for creating myelin is by 3 years old. By this point, she will be permanently caught up, partially behind or stay where she is at currently. At 3, we will do another brain MRI to determine which of the these has happened and from this we can determine what point she will be able to develop physically and mentally.
-There is nothing special we can do to make the myelin get thicker faster.
-We will continue to meet with therapists to stimulate her development and neurodevelopmental doctors to track her changes in every area.
All that to say...we don't know much.
Aimee could catch up and be normal, simply using her own time clock for development.
or Aimee could be a year behind the average kids.
or Aimee could stay under developed.
No matter which of the above happens, the truth is that Aimee is lovely and a rich blessing to our family. We are having fun playing with her as she is becoming more interactive. Please pray that we would learn to completely enjoy her for who God has made her to be and that His purpose would be made perfect in her life.
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